Rare Conditions Suck

I have Ehlers Danlos Syndrome which itself is considered rare. To make matters worse, EDS increases the chances of developing other rare conditions including Chiari Malformations and Eagle Syndrome - both of which I have/had and had to fight every step of the way for help.
One rude neurosurgeon said, “In my career, I’ve never meant anyone with a chiari malformation serious enough to require surgery.” Well, he hasn’t had much of a career because mine was life-threatening. Stay away from mediocre doctors.
Vent Over. Thanks for listening.

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WOW, dj310! I’m sorry to hear you’ve had more than your fair share of health challenges. How frustrating for you to have encountered unsupportive doctors in the midst of a time of crisis! You’re always welcome to vent on here!
There are a number of ES sufferers on this forum who have EDS & a few also w/ Chiari Malformations. You can use the magnifying glass at the top of this page to search for posts w/ those words in them. I believe Ben’s Friends also has support groups for both of those if you want ongoing support in that regard.

Have you found a surgeon to do your ES surgery or are you still looking? We’re here for you always!

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I really feel for you, having ES is enough, let alone EDS as well, so you’re very welcome to vent on here! I totally agree that rare conditions make life even worse than other chronic pain conditions! The ignorance of some doctors is shocking, but thankfully there are some good & helpful doctors out there, so we do have someone to turn to. And I’m sure we’re all thankful to Ben’ Friends for sites where we can get help & support!
Big hug to you & I hope you can find the right doctor to help soon…

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Isaiah, thank you for your kind response.

I am still undiagnosed but I am certain that Eagle’s is my current problem. I’m in the process of getting the correct CT scan which i will then forward to a couple of ES doctors on our list.

Hi Jules, yes having EDS in itself is no picnic. LOL. But having to fight with doctors about other conditions (which I’ve been assured cannot possibly happen to the same person) is exhausting. For me, it’s not worth the energy trying to convince a doctor about a rare condition just because he/she is local. I’ve learned to stick to the experts.


Good strategy, dj310! Many people on this forum have traveled far from home to see the more experienced ES surgeons. I’m glad you’re willing/able to do what you feel is best for you!

Please keep us in the loop as your story/diagnosis unfold. :blush:

I have EDS as well as vascular Eagle Syndrome and a skull based CSF leak. I understand what you’re going through.

As you know EDS is way more than “being bendy” and our systems work differently. It complicates everything. Your post sounds like you were able to find a doctor who was helpful. I’m glad that you were,

If you ever need to vent I’m here. Hopefully some of my experiences can be of help to you or anyone else.


Thank you MountainDweller.
What’s holding me back on pursuing a diagnosis and treatment for Eagle Syndrome is my previous surgery. I have hardware in the base of my skull. Could I find a surgeon willing to operate on me? A lot of doctors won’t want to deal with this damn plate in my head. That is what’s stopping me from getting that CT scan.

Hi DJ310,
That’s an unusual predicament and I’m sorry that you’re going through this. Don’t give up on this, keep contacting head and neck surgeons and maybe one of them will have a solution or know of someone who can help you. I hope you’re able to find a resolution soon.


dj310 -
A CT scan is safe w/ the plate in place. You probably know an MRI wouldn’t be. I don’t see why the plate would be a problem if a skilled head/neck or skull based surgeon was to work w/ you. Worst case scenario, you might not be able to have your styloid(s) removed all the way back to the skull base but many people on this forum have had successful ES surgeries w/ some styloid left in place. As long as it’s cut back to the normal length (about 1" or 2.54 cm long) & the cut end is smoothed off, a good result can be achieved. If your problems are coming from calcified ligaments, those generally start at the hyoid bone & extend toward the styloids so the plate shouldn’t be an issue at all.

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